I know this is weird, but I miss singing. I mean really belting out the tunes and SINGING. I don't know if this is permanent, but I have already dropped a good fifth in my range and am very nearly heading toward a full octave nose dive... That and it kinda hurts to sing full force anymore.
Today I was straining to sing along with a wonderful old bluesy tune, just for the pure joy of it ~ and even with as rough as my voice is, my sweet Nathan said, "wow mom, you sing really pretty". I nearly started to cry.
Of course, I won't go into the other day when I was looking PARTICULARLY beat and haggard and he told me I was "ugly on the outside but pretty on the inside". I knew what he meant, but Carly laughingly made the comment , "I'm never having kids....". I just laughed because he is SO innocent and trying SO hard to give compliments. He really is a sweet boy.
Monday, March 8, 2010
tired, but grateful for a good day.
The title about said it all. I am just so anxious to get this going again! It seemed to take forever to get the ball rolling, and now ( thanks to prayers and miracles) everything has just fallen into place.
ok, back to the blog...
I saw an acquaintance today that I had lost contact with. She made the comment that I looked like I had been loosing weight. (and those of you following this, please don't worry, all things are relative and I still have a LOOOOOOONNNNNG way to go before I am considered malnourished...) I jokingly old her thanks, but I don't think I would recommend my diet plan. She was so cute then, she asked if it was that lemonade diet (its the fad around here right now). I was wicked and said, " Nope, I am on the cancer diet.". I was trying to be silly, but she threw her arms around me and with tears in her eyes told me she was just recovering from breast cancer. I felt about knee high to a grass hopper then and actually shared a momentary bonding ~ with no flip answers, no pretending, no facade. Just pure understanding. Weird what can bring people together sometimes huh?...
BTW , before I forget, I wanted to help get the word out...
Don't worry, it wasn't pureed chicken....
ok, back to the blog...
I saw an acquaintance today that I had lost contact with. She made the comment that I looked like I had been loosing weight. (and those of you following this, please don't worry, all things are relative and I still have a LOOOOOOONNNNNG way to go before I am considered malnourished...) I jokingly old her thanks, but I don't think I would recommend my diet plan. She was so cute then, she asked if it was that lemonade diet (its the fad around here right now). I was wicked and said, " Nope, I am on the cancer diet.". I was trying to be silly, but she threw her arms around me and with tears in her eyes told me she was just recovering from breast cancer. I felt about knee high to a grass hopper then and actually shared a momentary bonding ~ with no flip answers, no pretending, no facade. Just pure understanding. Weird what can bring people together sometimes huh?...
Sunday, March 7, 2010
SO MUCH TO DO .... and so little energy...
6
Gotta get all packed up to go to LA on Tues night. I also just want to get everything in order as much as possible before I leave for the next 5 1/2 weeks. I know I will be home on weekends ( knock on wood) but I most likely will have even less energy than I do now. And the great part is that when I am all done with that wonderful and fun experience of chemo and radiation, and I come home, it will be time for us to move. (sigh)
We still don't know where we will be moving to yet, we are still looking , but I am SURE it will be smaller than the place we live in now. Sooo.....I need to be almost cruel about culling through all my junk. If we haven't used it in a year- its gone. Cary was thrilled to see an old ugly house dress of mine bit the dust~ but not before Ben put it on Grecian style and started to sing "all the single ladies" to wake up his brothers this morning, all the while trying to dance on their beds. I just loved that.
I just finished going over the schedule for once I am up in LA and Miss Carly has left for New York. I decided I must be borderline OCD ( the one that doesn't involve the clean part) . I wrote out all sorts of instructions that I really think won't matter a bit if they are strictly adhered to or not... I suppose it was just to make ME feel better.
Today I thought I would post more specific instructions for my readers... follow them to the letter, and don't get lost this time!
Gotta get all packed up to go to LA on Tues night. I also just want to get everything in order as much as possible before I leave for the next 5 1/2 weeks. I know I will be home on weekends ( knock on wood) but I most likely will have even less energy than I do now. And the great part is that when I am all done with that wonderful and fun experience of chemo and radiation, and I come home, it will be time for us to move. (sigh)
We still don't know where we will be moving to yet, we are still looking , but I am SURE it will be smaller than the place we live in now. Sooo.....I need to be almost cruel about culling through all my junk. If we haven't used it in a year- its gone. Cary was thrilled to see an old ugly house dress of mine bit the dust~ but not before Ben put it on Grecian style and started to sing "all the single ladies" to wake up his brothers this morning, all the while trying to dance on their beds. I just loved that.
I just finished going over the schedule for once I am up in LA and Miss Carly has left for New York. I decided I must be borderline OCD ( the one that doesn't involve the clean part) . I wrote out all sorts of instructions that I really think won't matter a bit if they are strictly adhered to or not... I suppose it was just to make ME feel better.
Today I thought I would post more specific instructions for my readers... follow them to the letter, and don't get lost this time!
If you do , it's not my fault...
Saturday, March 6, 2010
past posts
I got a couple of concerns that the past posts have "disappeared" Sorry about that, I just archived them. If you want to go back and read old posts ( I know I am witty, but really people you are embarrassing me.........oh...you wanted them as evidence....*sigh) just go to the side bar where it says blog archive. Right now I just have them by date. If you want the titles back, just let me know. No biggie to me either way.
...........speaking of evidence.........
Friday, March 5, 2010
just tired
4
nothing new today, just really tired. I am starting to slowly but surely get things packed. Don't expect to come into my house and see a whole bunch of boxes all taped up and ready to go~ I just did the little boys books today. Carly has been working on boxing up all the "extras" like CDs and DVDs we haven't watched in like 8 years as well as helping me with the boys. I think we are wearing that poor girl out!
before I go, I wanted to make sure you all knew what to do if you encounter a mountain lion... You NEVER know....
OK, all of you who kinda of snickered, vs all of you that said "ewwwwwww..... " - let see a show of hands....
nothing new today, just really tired. I am starting to slowly but surely get things packed. Don't expect to come into my house and see a whole bunch of boxes all taped up and ready to go~ I just did the little boys books today. Carly has been working on boxing up all the "extras" like CDs and DVDs we haven't watched in like 8 years as well as helping me with the boys. I think we are wearing that poor girl out!
before I go, I wanted to make sure you all knew what to do if you encounter a mountain lion... You NEVER know....
Thursday, March 4, 2010
many thanks...
3-8
Ok here people, I have been trying to keep a notebook of all the kind things people have done for us. I am trying my best to make sure I either call you personally or at the very least send a thank you card, but you guys are WAY ahead of me. PLEASE forgive me if I do not get all my notes written or calls made. I truly DO appreciate all you are doing for me and need for you each to feel the love and gratitude wafting your way. I could never do this without all of you! In all humility, we~ the Clark family as a whole, as well as a sicko chick that is going to get better, thank you with all our hearts. You are angels.
Sending you all my love because ....
Ok here people, I have been trying to keep a notebook of all the kind things people have done for us. I am trying my best to make sure I either call you personally or at the very least send a thank you card, but you guys are WAY ahead of me. PLEASE forgive me if I do not get all my notes written or calls made. I truly DO appreciate all you are doing for me and need for you each to feel the love and gratitude wafting your way. I could never do this without all of you! In all humility, we~ the Clark family as a whole, as well as a sicko chick that is going to get better, thank you with all our hearts. You are angels.
Sending you all my love because ....
Wednesday, March 3, 2010
got the tatts....
2-7
the tattoos aren't nearly as exciting as I hoped they would be. Just little tiny freckles on my belly and sides. My sis suggested I let my kids come up with new "connect the dot" pictures each week. Since I only got three dots, it should be pretty easy for them to come up with some pretty clever ideas...
OK, so here is the scoop as I understand it... I will go into LA on the 9th. My radiation starts on the 10th . I will start oral chemo at that time. Then on the 15th I will start the intravenous chemo. Radiation will be 5 days a week, oral chemo ( the pills) will be taken every day for as long as I can keep swallowing them ( the hope is that the tumor will start to shrink before my esophagus starts to swell from all the radiation - so they won't have to do what is called a "portacath" ) and the intravenous chemo will be given as often as my body can take it.
Also, I got approved for the hospital housing! HOORAYYYYY! I will stay in a hotel until about the 18th, then move into the hospital owned apartment. The treatments go for 5 1/2 weeks (March 10th to April 16th). Then I get to "rest" for 6 weeks, then get the surgical part done. During the "rest" part is when we are scheduled to move so that should be interesting.
The next part is for the local people, so please forgive me for being kinda boring.... I also do not in the LEAST want to sound demanding or presumptuous, so please know this is written with the understanding that MANY of you have asked what you can do to help. In all humility, I submit the following. If you are far away, or just have too much on your plate right now, please just skip right to the bottom....
Ok back to including everyone... Boy I felt so cliquish! (sorry....)
boy I can ramble when I wanna ! Anyway, all the love and support and prayers are DEFINITELY being felt. I cannot thank all of you enough... so with that,I leave you with this.....
the tattoos aren't nearly as exciting as I hoped they would be. Just little tiny freckles on my belly and sides. My sis suggested I let my kids come up with new "connect the dot" pictures each week. Since I only got three dots, it should be pretty easy for them to come up with some pretty clever ideas...
OK, so here is the scoop as I understand it... I will go into LA on the 9th. My radiation starts on the 10th . I will start oral chemo at that time. Then on the 15th I will start the intravenous chemo. Radiation will be 5 days a week, oral chemo ( the pills) will be taken every day for as long as I can keep swallowing them ( the hope is that the tumor will start to shrink before my esophagus starts to swell from all the radiation - so they won't have to do what is called a "portacath" ) and the intravenous chemo will be given as often as my body can take it.
Also, I got approved for the hospital housing! HOORAYYYYY! I will stay in a hotel until about the 18th, then move into the hospital owned apartment. The treatments go for 5 1/2 weeks (March 10th to April 16th). Then I get to "rest" for 6 weeks, then get the surgical part done. During the "rest" part is when we are scheduled to move so that should be interesting.
The next part is for the local people, so please forgive me for being kinda boring.... I also do not in the LEAST want to sound demanding or presumptuous, so please know this is written with the understanding that MANY of you have asked what you can do to help. In all humility, I submit the following. If you are far away, or just have too much on your plate right now, please just skip right to the bottom....
The only thing I will need for me personally is a ride from home up to Cedars each Monday morning (leaving about 9:30 a.m.) for those 5 weeks. That would be 3/15, 3/22, 3/29, 4/5 and 4/12. Cary will come bring me home on Fridays.
The times I will need physical help, will be after March 20th when our sweet Carly has to go pack up her things to FINALLY get reunited with her wonderful husband. He has been serving his country in Iraq up 'til now, but gets to finish up in beautiful upstate New York.
The things I need help with are mostly things having to do with my kids. The bus comes at exactly the same time as the older kids get out of school, so we might need someone to come meet the bus while Cary runs to pick up kids ( 3:20) Tuesday through Friday. Another thing we need help with would be making sure Jonah got home from Kindergarten (2:00), helping kids with homework, doing school projects and make sure they get dinner on Tues nights. (Cary has to leave for work by 4:30 on Tuesdays ). Then, we will need someone to help get them ready for bed, tuck them in, and read them stories. We would need some sweet soul to spend each Tuesday night in our guestroom while Cary is at work. That is just so if the kids get scared or if there is an emergency. Hubby comes home at 6:00 am and will take over from there.
I will be home on the weekends (hopefully) so I can cover the every other Saturday night and every Sunday night although I might need help with dinners...
Our next door neighbor has graciously offered to help with Mondays, and Cary has Wednesday, Thursday, Friday and every other Saturday off to cover the rest of the week. Poor Cary will just be flying solo.
Once school gets out, Cary's other beautiful children ( Haley and Aaron) have offered to trade off and cover the summer ( I feel so blessed to have them in my life by the way...) and just in time for my surgery.
Please, if any of these time slots look like they could work, contact Cleo as she has the main schedule.
Also please note that any getting kids off the bus or picking them up will require me to first submit your name to the schools/bus company so they can know you are not just some stranger abducting my kid. Please, for my sanity's sake and the schools, if you are planning on helping that way, please let me know ahead of time so I can make sure your name is on those lists. thank you so much.
Ok back to including everyone... Boy I felt so cliquish! (sorry....)
boy I can ramble when I wanna ! Anyway, all the love and support and prayers are DEFINITELY being felt. I cannot thank all of you enough... so with that,I leave you with this.....
Tuesday, March 2, 2010
hooray!
Whole bunch of good news!
#1 PET scan came back "as good as it can get" for a person with cancer. Everything is completely localized so much so that I was "downgraded" from a T3 M1 to a T3 N1. Doesn't sound like much I know, but dang it it is HUGE!!!!(trust me)
#2 Upper GI came back with really good results as well. Showed EXACTLY where all obstruction is. Again - all very localized.
#3 Radiologist put my name in for the hospital to consider as a candidate to use one of the two hospital owned apartments in the area! If the apartments are both not available and they find that the need is still great, they will help pay for a hotel! Please pray I can get qualified for that as that would save a WHOLE lot of stress and worry as well as precious finances!!! I would still come home on the weekends to see my sweet family though; I couldn't do this without them.
I go in tomorrow for the "simulation". A mock up of how exactly they will line up the eternal beam of radiation. I will get to get 4 tiny little tattoos on my midriff area to mark exactly where they have to line me up each day to "zap" me. They will just be little polka dots, about the size of freckles, but I was really hoping for a snake to connect the dots - or, oooo.... maybe a big Mauri warrior design.... Whaddya think?!
#1 PET scan came back "as good as it can get" for a person with cancer. Everything is completely localized so much so that I was "downgraded" from a T3 M1 to a T3 N1. Doesn't sound like much I know, but dang it it is HUGE!!!!(trust me)
#2 Upper GI came back with really good results as well. Showed EXACTLY where all obstruction is. Again - all very localized.
#3 Radiologist put my name in for the hospital to consider as a candidate to use one of the two hospital owned apartments in the area! If the apartments are both not available and they find that the need is still great, they will help pay for a hotel! Please pray I can get qualified for that as that would save a WHOLE lot of stress and worry as well as precious finances!!! I would still come home on the weekends to see my sweet family though; I couldn't do this without them.
I go in tomorrow for the "simulation". A mock up of how exactly they will line up the eternal beam of radiation. I will get to get 4 tiny little tattoos on my midriff area to mark exactly where they have to line me up each day to "zap" me. They will just be little polka dots, about the size of freckles, but I was really hoping for a snake to connect the dots - or, oooo.... maybe a big Mauri warrior design.... Whaddya think?!
Sunday, February 28, 2010
grrr....
2-8
I was feeling all proud of myself because I got up, got all the kids ready and made it into the church parking lot. I then proceeded to get really sick. That coupled with the fact that Cary hadn't slept and was hacking up a lung, convinced us both that we needed to go back home. I am really sorry to have missed church. I truly enjoy it and it was just such a bummer to miss while I still can go. I guess about 2 to 3 weeks into chemo, I won't be able to go to church, so I was hoping to go as much as I could before all that started. Blech.
Going into LA for a PET scan tomorrow. The PET scan works by tracking down a sugar the medical technician puts in me about an hour before the test. Since cancer apparently gobbles up that sugar faster than other parts of the body, I was told that in order to get an accurate test, I could not have any sugars ( ok understood ) or Carbohydrates (WHAT???) 24 hours before the test.
OK, that leaves protein right?... well, even protein shakes have a small amount of carbs or sugars in them! I looked at my baby food jars and was shocked to see that they added cornstach - so that added carbs.
SSooooo, what is high in protein....has no sugar and no carbs....
steak...nope.... pork chops... nope...shrimp... nope...ooo I know, deli meats, oh wait, nope.... CANT SWALLOW any of them...I have to stay healthy and maintain my weight so no feeding tubey tube come my way...
I ended up getting a pouch of salmon and pureeing it with water. hmmm.... jury is still out on that one...I have canned chicken planned for dinner. Won't be pureeing that baby up until I ABSOLUTELY have to though (*involuntary shudder* - ok be honest, how many of you did that shudder with me?! )
Complain... complain.... complain.... If you all get too sick of hearing it from me, please don't worry, I have been thinking of installing this new complain button for when I get TOO whiny. Let me know what you think.... :)
I was feeling all proud of myself because I got up, got all the kids ready and made it into the church parking lot. I then proceeded to get really sick. That coupled with the fact that Cary hadn't slept and was hacking up a lung, convinced us both that we needed to go back home. I am really sorry to have missed church. I truly enjoy it and it was just such a bummer to miss while I still can go. I guess about 2 to 3 weeks into chemo, I won't be able to go to church, so I was hoping to go as much as I could before all that started. Blech.
Going into LA for a PET scan tomorrow. The PET scan works by tracking down a sugar the medical technician puts in me about an hour before the test. Since cancer apparently gobbles up that sugar faster than other parts of the body, I was told that in order to get an accurate test, I could not have any sugars ( ok understood ) or Carbohydrates (WHAT???) 24 hours before the test.
OK, that leaves protein right?... well, even protein shakes have a small amount of carbs or sugars in them! I looked at my baby food jars and was shocked to see that they added cornstach - so that added carbs.
SSooooo, what is high in protein....has no sugar and no carbs....
steak...nope.... pork chops... nope...shrimp... nope...ooo I know, deli meats, oh wait, nope.... CANT SWALLOW any of them...I have to stay healthy and maintain my weight so no feeding tubey tube come my way...
I ended up getting a pouch of salmon and pureeing it with water. hmmm.... jury is still out on that one...I have canned chicken planned for dinner. Won't be pureeing that baby up until I ABSOLUTELY have to though (*involuntary shudder* - ok be honest, how many of you did that shudder with me?! )
Complain... complain.... complain.... If you all get too sick of hearing it from me, please don't worry, I have been thinking of installing this new complain button for when I get TOO whiny. Let me know what you think.... :)
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